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When I started doing clinical ethics rounds, in the mid 1980s, I
decided to venture onto the pediatrics ward. The first patient I
encountered was a 3-year-old girl returning to her room, groggy from
general anesthesia. When I inquired about her, the nurse explained that
she had just gone through the procedure to donate bone marrow for her
1-year-old sister, who was preparing to undergo bone marrow
transplantation for leukemia.

GUEST EDITORIAL

Many bioethical disputes are conceptual. This means that people
quarrel about the use of words that they see as important. The
underlying idea is that whoever wins the verbal argument will also be
ethically right.

In addition to referring to the Cambridge Quarterly of Healthcare
Ethics, the letters “CQ” have another meaning. Since
1912, “CQ” has been recognized as the international radio
signal for alerting attention. This journal's goal has always been
to alert you to the most important issues in bioethics, and none is
more vital to the future of our field than how we define our
professional community.

The focus of the Special Section in this issue is the ethics of how
knowledge is acquired through experiments on human subjects. Assuming
that our use of language may have an effect on our thoughts and
behavior, how we commonly understand the term “subject” in
research with humans can undercut what is most important from an
ethical perspective. The notion of “subject” can be
crucially ambiguous in that it can refer to the units making up the
“n” of a research study—those nameless,
faceless, numbers supplying the information that supports, or fails to
support, the researchers' hypothesis. On the other hand,
“subject” can have a much deeper meaning. In addition to
being participants in a study, the humans involved are, have been, or
will be the subjects of lives—that is, they are real
persons, with all the personal characteristics and social connections
that entails. It is because of this status that they deserve to be
regarded and protected. The degree to which we lose sight of this
distinction increases the danger of crossing the ethical limits of
human subjects research.

Attempting to balance the needs and interests of minors with the
obligation to protect them from their own potentially harmful decisions
poses an ethical challenge for the physician. This problem is further
exacerbated when the context is not medical treatment but organ
donation. That is, medical treatment scenarios generally involve
decisions likely to result in objective improvements to the
minor's health status. Consent to organ donation, however, raises
several vexing problems. First, how should the provider measure both
the cognitive ability and competence to consent of the minor to ensure
that the minor comprehends the risks and benefits of donation and that
no coercion is involved? Second, given that improvement of one's
health is an unlikely scenario, is there a way to measure subjective
determinations of satisfaction and altruism enjoyed by a minor
following organ donation? If so, should the physician regard these
values in a manner analogous to physical improvement? Finally, are
parents the appropriate decisionmakers for their children when a
sibling-to-sibling donation occurs? Is it possible for parents to
always act in the best interests of both children in this event?

The recent history of the Canadian healthcare system has been
increasingly one of shortages. There are delays for services that
impose risk and hardship, disparities between the accessibility of
healthcare for rural versus urban populations, and a lack of adequate
coverage for or access to prescription drugs, diagnostic services, and
homecare. Add to these problems shortages of healthcare
providers—in particular, physicians and nurses—and
state-of-the-art equipment, and we can understand the universal
agreement that the Canadian healthcare system must change. The only
question is how. Some argue for modifications within the basic
framework of a one-tier single-payer system; others for more radical
reform that will allow for infusions of money by expedients such as
user fees, extra billing, or a full-blooded second tier where one can
buy any healthcare one wants.I am
indebted to Don Brown for comments and discussion.

With the considerable attention given to UNESCO's Universal
Declaration on the Human Genome and Human Rights, the time has come
to take another look at the concept of dignity, on which this
document is morally founded. The term “dignity” now appears in
many national constitutions and international bioethical statements. It
has also become popular among Continental European ethicists, many of whom
wish to challenge the particularly American and overtly individualistic
principles of “autonomy,” “justice,”
“beneficence,” and “nonmaleficence.”This paper was produced as a part of the project
Genes, Information, and Business, financed in 2000–2003
by the Academy of Finland. The first draft was presented at the fourth
International Bioethics Retreat in Paris, May 2001. My thanks are due
to the participants of the meeting for their constructive comments and
suggestions.

Due to modern biochemistry and, in particular, recent developments in
genomics, proteomics, and bioinformatics, human samples (organs,
tissues, cells, genes, etc.) have become the most important raw
materials for advancement in the health sciences. Such material has
been at the center of fundamental biomedical research for a long time.
What is new is its increased usefulness in research with direct
clinical relevance, such as the development of drugs. Because of the
larger commercial involvement in such research, this has also led to
greater economic interests in human biological material and in the
information that can be extracted from it.

Research involving the dead has not been regulated, and little, if
any, institutional oversight has been provided. As a result, the
numbers and types of research projects involving the dead are at best
poorly characterized and at worst, unknown. The University of
Pittsburgh instituted a mechanism for oversight of such research in
June 2002. In this article, we report the experience of that oversight
body, the Committee for Oversight of Research Involving the Dead (CORID),
during its first 18 months.

What standard or principle should guide decisionmaking concerning the
permissibility of allowing children to be organ donors? For a long
time, it has been widely assumed that the best interest of the child is
the appropriate standard. But recently, several critics have charged
that this standard fails to give due weight to the interests of the
family and the intimate relationships that the family makes
possible.1,2 This article reviews and rejects both the
best-interest standard (as it has been traditionally conceived) and the
alternative standard recommended by the critics. I then propose a new
standard to help parents, healthcare professionals, and judges decide
when it is and is not permissible for children to serve as organ
donors. This new standard modifies and broadens the best-interest
standard to allow it to account adequately for the contribution that
intimate relationships make to the well-being of children.

In discussions among nonphilosophers, the ethical argument from
naturalness frequently comes up. “Of course, cloning should be
banned—it is unnatural.” “Surely you cannot deny that
homosexuality is unnatural (and hence it should be condemned).”
“The immorality of gene technology is apparent because things
like that do not happen in nature. Genes do not jump between species
and crossbreeding produces infertile offspring.” Even those who
come from a philosophical background can catch themselves thinking,
“That is unnatural!” and finding grounds for suspicion from
the thought. But what do we mean when we talk about (im)morality and
(un)naturalness? What interpretations can be given to the ideas of
natural and unnatural in ethical discussions? What are the implications
of these interpretations? Are there good grounds for assuming that
naturalness is morally better than its opposite?This paper was first presented at the Fourth International
Bioethics Retreat in Paris, May 2001. I wish to thank the participants
for their comments on my paper. This paper was produced as a part of
the project Genes, Information, and Business, financed in
2000–2003 by the Academy of Finland.

Bioethicists currently working in the United Kingdom
demonstrate—as indeed do the very best of their colleagues
internationally—an eagerness to engage in two extremely different
but complementary approaches to their subject. First, they readily
become involved in discussions of concrete bioethical issues that are
of great concern to the medical profession, legislators, and the wider
U.K. public. Second, perhaps because they recognize the importance of
the “first-order” questions that exercise the public
imagination, they show themselves commendably willing to turn their
critical gaze onto the very methods and frameworks they use to address
those questions. The first approach we can properly call
“bioethical,” whereas we might term the second approach
“metabioethical.”

Informed consent is the bedrock principle on which most of modern
research ethics rest. That principle, like most others, has some
exceptions, such as for emergency situations and for some studies
involving very low risk. But what about situations that do not fall
into either of these categories? Are there such research studies that
are so important to society that we nonetheless are willing to involuntarily
enroll subjects, without their informed consent?

Last year we reported that there are no professorships in medical
ethics in Finland. This year we are happy to report that a chair in
medical ethics (albeit temporary) has now been advertised at the
University of Turku. We also gave details about the attempts to come up
with a law on assisted reproduction. As predicted, there
were problems, and eventually the proposal was withdrawn, leaving
Finland still without a law on assisted reproduction. The talk on
large-scale genetic databases has been surprisingly quiet, and even the
report published by the Parliament's working group on this matter,
implying that a population database should be created, went virtually
unnoticed. In this year's contribution, we address the
issues of male circumcision, stem cell research, and, within the field
of research ethics, the problem of defining medical research.

In this paper I examine the ways in which the concept of
“public interest” is used in biomedical policymaking to
justify the preemption or overruling of decisions made by individuals
about their own, their family's, or group interests in the field
of healthcare. I discuss six variants of public-interest justification,
before going on to consider a concrete example, the use of personal
health data in health services management and medical research. I
distinguish between the global public interest and particular public
interests and consider critically how the global public interest can be
said to arise from private interests. I show that there is always room
for the private individual to defeat appeals to public interest on
moral grounds, and hence that public interest cannot have overriding
moral force. Hence, public-interest claims need to be considered as
political appeals about competing claims and conceptions of justice,
rather than as shortcuts to defining the universal solidary
interest.

Despite the much-discussed court cases in the 1970s that permitted
some sibling-to-sibling kidney donations from minors,1
principles that can guide parental, medical, or judicial decisionmaking
are neither clearly articulated nor uncontroversial.